August 2010...anyone starting chemo besides me?!
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Calamtykel - Thanks for asking the hard questions and posting your onc's answers. I try to focus on the next thing only but admit I did way too much board reading and googling in July! I haven't had much relief from the port pain but will see if the steroids in my AC cocktail on Thursday help a little! I had a bmx and the side without the port is tender too so I think that contributes to the pain and uncomfortableness on the port side. Meanwhile I can't believe how great my new dog is! He is housebroken, calm, obedient and loves to sit in my lap! Rescue dogs rule! I feel sorry for whoever had to give him up and think it had to be the economic situation.
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I've been off the boards for a bit with a horrible head cold. I think I caught it from Lisa. Is that possible??!:)
Deb J- What a horrible experience. I"m so sorry you and your family had to go through that. I too start thinking "why this AND cancer", isn't it enough already? But I agree that God is big enough to take your ranting, he's heard it before from the rest of us that's for sure.
On Thinking About IT coming back- Me too. A hundred times over. And I'm also one of the ones that goes over to the Stage 4 boards and wonders at their tenacity and grace. But I'm also wondering "will it be me"?
On the Cosmic WHY ME?- Here's something that happened to me that I haven't really shared yet, but I believe it in strongly. About six months before my diagnosis I started having mild panic attacks. I AM NOT THAT SORT OF PERSON. I am not afraid of anything, not shy, not reluctant, totally confident, etc.etc. But these panic attacks were pretty awful, they'd happen every few weeks and had me at the doctors office pretty darn fast. My doctor took them verrrry seriously and did a full work up. Found nothing. The only thing he didn't order was an MRI but I had brain scans, heart tests, hormone reads, blood work, everything. On my final meeting with him to go over all these scans/tests I said to him, "I think I have cancer". He said, "You don't have cancer." I said "how do you know?" He said, "well I'm looking at everything and I don't see anything that points to cancer..." I was reluctant to believe him. I told my husband the same thing, who told me I was a nervous nelly.
You see Cancer was my biggest fear. EVER. I dreaded getting cancer. Of all the fears in all the world Cancer was my number one. Always has been since my grade 4 teacher died of it in the middle of the school year.
And here I was having these unexplained and weird for me panic attacks and I honestly thought my body is trying to tell me something. Something is not right. Less than two months later I found the lump. I haven't had a panic attack since.
Now to wrap alll this up, when I think about my body I trust it more now. It knew. It was trying to tell me. And my worst fear has been realized- I do have cancer. And it's not as awful as I thought. I might die from this someday down the road, I might also get hit by a bus. But I've been able to face my worst fear, live through that fear and get to the other side. And now I know I can trust everything my body tells me and push my doctor harder to find out what's going on.
So even if Stage 4 hits at some point, and the likelihood of that is slim to none, I'm ready for it. If I can face this fear, then I'll face that one too. And if I get hit by a bus in the meantime, then that's how it was meant to be. I'm doing my best to keep my body strong and healthy and listen to it. And I'm also doing my best to look both ways everytime I cross the street. But what I've realized already is that I can do this. I can.
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Wow, cancer was one of my biggest fears too. I used to think 'I'm glad I have so much sick time just in case...' and 'I'm glad they have the cancer support center just in case'. I think I was so scared of it because of the cancer AND because of the treatment.
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Hello gals, I am here. Lizzy thanks for thinking of me, that is terrible to hear that Ben & Jerry's uses toxic ingredients! Over the weekend I tried to take a mental vacation from BC stuff so I was off these boards and just relaxed and watched football with my husband. I came back yesterday to read and catch up on everyone but didn't get a chance to post. Anyway, I'm pretty much feeling back to normal now after AC #2 and don't get #3 until next Friday so I'm looking forward to some relatively good days over the next week.
On the whole recurrence thing, I think we all think about it but I try not to as much as I can. I try to focus on the chemo going all over my body and killing off the bad cancer cells so that none will be left. I also focus on the good role models I have in my family - this year my grandmother is 20 years bc free, and 2 of my aunts are 10 and 6 years bc free, respectively.
DebJ I was so sorry to read the story of Pup. I cannot even imagine what a difficult experience that was for you and I am sending you hugs. I know there is nothing I can say to make it better but I'm glad that you were able to share with us and I hope we have given you some comfort.
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zenith - thanks for the happy post! It's great to read happy things that happen to us here on the boards. I'm so glad you got this little doggie who needs you so much!
Wow - sweeney! I believe our bodies do know when something is wrong. I got very sick three years ago. i had every lyme symptom under the sun. My doctor refused to treat me for lyme because my tests were negative. Even though my husband and two of my boys were positive. I worsened and he said 'You're very healthy - you just have a virus or something." He dismissed it. I knew I had lyme - I was positive of it. I begged him for just a couple of weeks of antbiotics to see if it would affect it, since lyme tests are only 60 percent accurate anyway - they can't even test for the spirochete- they can only test the body for antibodies. He refused. Meanwhile it got to the point to where it took me five minutes to try to get out of bed in the morning - my entire body was like a board. I went to another doctor who was much more "lyme literate". He immediately flagged me as having lyme, right down to the suspicious rash on my chest and previous tick bite and put me on antibiotics. I remember leaving his office that day and driving home, clutching that script in my hand and crying and being so grateful. Someone believed me.
Point being, that I knew I was sick. I mean seriously - the healthy mother of four kids - did my family doctor think I actually had TIME to fake an illness?? Really! I reminded him that in all the years I'd gone to him, never once had I asked for medication - this was the first time. And he refused.
Meanwhile my lyme had gotten out of control - we hit it three or four different times with antibiotics - each time it got better and when I went off the abx, it returned slowly. It took a nutritionist/naturopath to finally eradicate it completely, but not before the damage was already done. I attribute my BC to that period of months when my body was so sick and busy fighting the lyme. I cannot be sure of that , but my surgeon said based on the size of my tumor, it probably began about three or four years ago.
I say always listen to your body. there is a mind/body connection and we know when something's wrong.
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I finally climbed out of the toxic and very stinky TAC sludge pit yesterday. I actually may be able to do it again.
Hugs Liz for thinking of me. 0 -
I'm sorry I gave you my cold, Sweeney - I won't kiss you next time. ;-)
Back in May, I had a number of dr. appointments I needed to make, and for some reason, the only one I decided to make was the mammo. I told myself it was because the mammo was easy and non-invasive, but something just told me to make the appointment first - and soon. I had dinner with a friend last night. He happened to be working really closely with me when I was diagnosed, and he was one of the first people I saw after my mammo, biopsy and diagnosis. He said that even though I was telling him that it was "no big deal," that "the doctor said these are usually totally benign," and that "I'm not worried about it." He was still getting this vibe from me that I believed something was going on. I remembered at that time that the day of the mammo, when they told me I needed to come back for a biopsy, I called my husband and burst into tears. Now, I have had biopsies before, and didn't have that kind of emotional reaction. I think that there was a part of me that just knew. And I am a bit of a hypchondriac.
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Good day chemosabes! I hope you are all doing well today.
The body knows and tries to tell us: I got the worst case of bronchitis in October and this super strong antibiotic was not helping. I was out of work for 3 weeks and I *never* miss time out of work for sickness. It was a complete anomaly. The months coming up to the bc dx all I could think was 'I am 39...why am I feeling like this?' There was a palpable sense of inertia that was just outrageous and one that I had never experienced like that in my life. Even working out was causing me to want to TAKE A NAP. That was so scary. I could not imagine what was going on. Now, in retrospect, I realize my body was busy using all of my resources trying to fight cancer and working out or anything else I did that required me to use my energy doing something else caused me to just collapse. I was almost relieved to find out I had bc but I knew something was wrong and I knew it was systemic. There was no way at 39 years old I was feeling so awful...my joints hurt, I did not even want to get out of bed in the morning, I was just completely not myself. As it turns out, I had 2.5 cms showing and over 3 hiding, or pre-cancerous cells. That is a lot of cancer going on! It was sucking my energy dry.
Not for nothing but since bmx I feel soooo much better and, I know you all will declare me crazy crackers on this one, but since my first chemo, after the crawl out of the sludge (Adey!), I feel even better. Which brings me to my next point:
Steroids: Kel, they are GRRRRRREAT!!!!!!!! Just like Frosted Flakes only tastier!!!!!!! They do keep us hovering over the chemo-induced rip tide coursing through our veins as well as giving us energy and masking a bunch of other stuff !!! Sterloids are good stuff indeed!!
JSW and Sweeney: I wondered where you 2 had gone! I figured JSW got her ice cream endorsement and Buttertart and Beavertail *worked* this past weekend!!!!!!! JSW-glad you had a non-bc weekend; they are good for the soul
Sweeney- glad you are feeling better. I must say, you quite succinctly hit the nail on the head again with your mellifluous meandering on the topic close to our hearts. It was very well put. I also love the fact that we so unabashedly share here. It is so good for our souls! The body does know. It tells us but we have to be available to listen.
Zenith: I am so glad you found your own little rescue dog! Good for you
I just love animals. Just this morning my "rescued" cat woke me up by standing on my back (stomach sleeper!) and purring in my ear and why? Because she wanted me to get up and open her window!!!!!! Sohardbnme: where have you gone? We have not heard from you in weeks it seems. I hope you are well. Come back and give us an update, woman!
Adey: yes, sludge! Gross, right?! Yuckamonga! I am so glad you have emerged! My next trip to the luck factory (!!!!) is one week from today!
Good day, girls! Look in the mirror and smile at yourselves today....it is fun! It makes you feel good!!!!
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Great story Sweeney.
Kel, I agree on the mind/body connection. My doc said my tumor could have been growing as long as 8 years before it was found. And 8 years ago my first husband died and I went into a long depression where I treated my body awfully with bad food and drinking too much. So maybe that period in my life has caught up with me. In my case, it was the doctor who had the gut feeling, not me. She ordered extra tests because she said she just had a "feeling" that this little place that looked odd needed to be investigated.
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Note to chemosabes: I got new, as they call kerchiefs, yesterday. I ordered six of them all in calico prints in different colors. They are 23" square and make perfect light weight and cute head covers. The cost is an unbelieveable $2.00 each. They're very stiff at first but after laundering they're perfect.The website is www.hats2cover.com. Great purchase!!!
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CalamityKel-
Its hard not to think about reaccurance and death. But like so many ppl said we ALL die sooner or later... I have been to the stage IV boards but dont post (think i have once or twice) my problem is because I am stage 4 I get too choked up when i read about the "angels" that were board members that have passed. I mostly stick here because I can hadle it here- might sound like i am a chicken but oh well I am!
In no way do I feel like I am dying, but death is a possiblity. Somethings you ignore and some you dont- death is one of them for me. I have had ppl suggest I write notes for my kids "just in case" but i prefer to live my life with them the fullest i can! (actually i wrote my daughter a note when she was a few weeks old and intend to give it to her when she graduates) Or another suggestion was to buy birthday cards for them... That might be freaky getting a bday car from "beyond the grave"
I havent been online for a few days because I have been doing so much with them. My son and I had 2 days in a row of awesome shopping! He picked out his halloween costume, got some art stuff, stickers... just days of spending good time together.....
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Texas, I can't decide if that birthday card idea is creepy or great..........the note would be so sad to write, but that I can understand. I actually wrote something for each of my kids when they were born (and I had no reason to think that I wouldn't be around) just in case something happened to me.
Halloween whith young children! OMG!
How are you doing with your treatments? Do I recall correctly that you were having a very good response a month or so ago?
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Sweeny-
that is so weird! When i was younger like 15 or 16 i had a very stange though- i was walking home from school and my breast ached (prob around that time of month) and i was thinking wow this is uncomfortable, my thoughts bounced here and there (i am like that lol) and then i thought "i'm prob gonna get BC" just like that! No rhyme or reason whatsovever, but i did think it. I never thought about it since, but after my DX i thought about that day- like was it a prediction or just a silly teenaged thought....
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i had my 3rd tx on last mon the SE were awful but i contribute that to the fact i was totally stressed! Feeling MUCH MUCH MUCH MUCH better now
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This cold sucks. I took a nyquil generic last night and I slept from 2 AM to 6 AM and couldn't take more until 8 AM. My husband asked me if I might feel better in a relciner so I got up and he got to sleep a while longer without me hacking beside him. I slept again from about 9 AM until 3 PM I took another dose of the Nyquil. Oh yuck, I am drinking liquids and resting, I have been resting for weeks now I should be in prefect health right? Hah.
My husband and my DD aren't ill, where did I get this? Whine, whine, moan.
All of your responses about the swollen lymph node made me feel much better, I had scared myself. Thank you, it is so good to have some feedback. If I ask my husband all I will do is scare him.
Texas, some of my best memories were of plannng out Halloween costumes and making them. One year our DD was the Random House Dictionary of the English Language, second edition, unabridged. I sent her photo to the editor of the dictionary and before long a very heavy box came addressed to our DD iand it was the dictionary as a gift to her. Being a kid, she said maybe she should have been a box of Fannie Mae Candy! You can make Christmas ornaments together that the kids, under any circumstances, will enjoy as adults. Have a great time with them, making memories for all of you.
. I agree the Droids do make me feel better during the day however I feel very emotional as I am coming off of them.
Zenith, I think a rescue dog saved my life about 4 years ago. I was plunging into a deep depression and this little puppy mill rescue dog who was afraid of everyone, who hated men, who wouldn't let anyone touch him with a comb, who would not allow himself to be petted, decided I was his person. Together we made our way through the depths, he becoming a dog, me eventually coming up for air from the depths of where my spirit had plunged. I think the healing power of the relationship with dogs is powerful.
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Hi Chemo sistas, for the first time since I was diagnosed, this am when I was getting ready for work I was sad and frustrated. I wanted to crawl back into bed and not deal with no hair, no boobs, hats and wigs I was just sad. Rarely do I ever feel this way. I was thinking what if it doesn't go away. Thank god by noon I felt better.
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Iowa Sue, I feel lke that, emotional and very down during the days I am going off of steroids. I hope your difficult morning has something you can point to like the Droids. I still feel bad every other week but at least I know why. It isnt that the issues aren't real just no usually so angst filled.
I am glad you felt better later.
GInger
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IowaSue - I love your new picture! Glad you felt better by noon, you are so strong!
Gingerbrew - Would a hot bath help with the congestion?
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Not the steroids, I start taking them tomorrow and I just take it for 3 days, I have tx on Thur.TCH, I get the chemo every 3 weeks. I have physically felt good the last two weeks. I am wondering if it might be the migraine meds. they gave me to take daily at bedtime, pamphlet says the med. is for chronic pain and anxiety (which I don't have anxiety), and I am always leary that taking med. for something I'd don't have and it having an adverse effect on me so I am wondering if it is making me feel that way.
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Not the steroids, I start taking them tomorrow and I just take it for 3 days, I have tx on Thur.TCH, I get the chemo every 3 weeks. I have physically felt good the last two weeks. I am wondering if it might be the migraine meds. they gave me to take daily at bedtime, pamphlet says the med. is for chronic pain and anxiety (which I don't have anxiety), and I am always leary that taking med. for something I'd don't have and it having an adverse effect on me so I am wondering if it is making me feel that way. One more thing chemo pause? IDK I've been on my monthly since my last chemo tx just about 3 wks. ago..... I've been thinking STOP already!!!
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I love doing craft stuff with the kids, i usually make my own costume but they want to buy their and hubby encourages that cuz he thinks they are cool (wel not cool on the wallet lol)
Our next project is making a photo collage of my son, he is almost 3 and i made one for his sister when she was like 6 mo and that is something everyone that comes to my house asks- where are the pics of korben... i finally bought the poster and am gonna do it this weekend. The kids get to color the background and all
Also a little emotionalhere too... not sure if it was reading the posts about mets and reoccurance but something set me off this afternoon
Have a good evening ladies and a wonderful WED!
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IowaSue - I'm glad you felt better. I think it is perfectly normal to have times when you feel sad or upset and not want to deal with all of this. I feel that way at times, and I don't think it is from any of my meds, I think it is because I have CANCER and it can be overwhelming. This too shall pass.
I hope I don't offend anyone, but I just think it is normal to feel sad sometimes and I think that our culture over-medicalizes sadness. I know that depression is a real illness, but I also think that being sad or being blue sometimes is a part of life, and I see so many people who want drugs to deal with the fact that they are just sad.
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ahhhggg. I am writing this for the third time. I think it's the backspace button that is eating my posts, but here I go again.
I had third round THC today. I was the only female in a room full of men today. I guess I had forgotten how many men are fighting the cancer battle too. One man was there my second time too. He was having a very bad time. I heard the nurse tell him he could not have treatment today as his renal function labs were so bad. He was getting fluids and meds. I think he is losing his battle, and I felt so bad for him and his wife. It was difficult to watch from such a close distance despite being a stranger. This is sort of what Cancer does to us all with it though. It bounds us, makes us members of a club we didn't choose to join, and humbles us, but grants us Grace if we choose to take it. I talked to God today for the first time in a while, and I asked for comfort for this man and his family, and I thanked God for the blessings he has given me.
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DebJ: that "losing of the posts" has happened to me before. Now what I do is compose my response in a word document then I cut-and-paste it into the "reply" box here. I am not sure if you know the shortcuts so here goes: highlight and press CTRL + C in the document and then put your cursor in the reply box and press CTRL + V. Those are the shortcuts for cut-and-paste.
In any case, I had to tell you, and I hate to admit it but, the hardest part for me is being in the infusion room. There are roughly 20 chairs and 2 private rooms in the infusion center I go to. For my first tx it was packed until early afternoon. Also, because one of the drugs I am on requires it to be thawed, and I guess they won't thaw it in advance because people don't show up, I have to sit there all that extra time. I am like a sponge when it comes to other's emotions and I sit in that room, headphones on, working on my computer but I am painfully aware of the despair surrounding me. It sucks. Next time I am going to go to the hospital cafeteria and wait until they call me after that stuff has thawed because I don't want to sit in that infusion room any longer than I have to. I know that sounds wrong on some level but emotional health is really important and I am overwhelmed by what I feel when I am in that room.
The woman next to me was so miserable...I was so glad I asked them BEFORE someone arrived to partially pull my curtain so that I did not breach the privacy of the person next to me. Of course, that was a lie. I already got a sense of what I could expect and decided I wanted to avoid seeing any further sadness as feeling it was enough for me. I know my experience was certainly different from your's but I just absorb other's energy. There was one woman who stood out: she had the most beautiful smile and the most lovely hot pink hat! She was lovely but that was about it. Another thing is a lot of people bring someone with them. The lady next to me brought her mother and some brought spouses or other family members. I did not want anyone with me. Again, I feel their emotional health and/or reaction to the situation would be more than I want to deal with.
On a more positive note....my acne is clearing just in time for the next tx!!!!!!! Also, and this makes me very happy, MTV is actually playing music videos again!!!!! At this hour of the morning, like 5A-8A EST, I am actually able to watch the videos that these artists are winning VMAs for! Speaking of which, the lead singer of Green Day, thankfully, pointed out during the VMAs that MTV is giving out awards for videos it no longer airs! Sure enough, there are videos being aired once again. I grew up on MTV and am glad to see traces of what is once was again.
Good day girls!
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Lizzymack1, thanks for the posting hints. I had written quite a lot, but just too frustrated to redo.
I don't like the infusion room either. It was never what I expected. I feel so exposed there also. Like you I try to involve myself in activities to preoccupy my mind and time, but like you, I'm constantly aware of the others and just can't miss some of the signs and symptoms of their care. Just don't like it at all. What a strange situation to have ended up in.............
I found out yesterday my Clinical Trial Nurse is leaving and won't be there next chemo. I am so bummed out. Beth was the best. She was my go to person. She always got answers, she always took time, followed up, and she remembered so I didn't have to tell the same things 12 different times. I already miss her.
I also told the staff about the girl brusing my port access in Lebanon. They said the knew there was a new person there, " a different kind of nurse". What does that mean?? Also said she would get better, but I have decided not at my expense.
I have made a pot of coffee and it actually smells good......Just took my Emend and my steroids. Did better last time when they extended my steroids and tapered slowly. Hope it works better this time. Just know the first time was horrible. I literally could not raise my head, and was having some really morbid thoughts. Those of you who crash so badly might want to ask about a slower taper. Take care of yourselves and feel better.
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Wow - I suddenly feel so lucky about where I get my chemo. I go to a small oncology office in SF. There are 3 oncologists who work there, but only 5 chairs in the infusion room, which has a lovely view of San Francisco. There are 2 nurses who work there, and both of them are really funny and positive and kind and helpful and bring a really positive energy to the room. I totally love them, and am trying to decide what I'm going to bring them for Christmas. :-)
I, too, tend to absorb the emotions around me, and I think because the nurses are so positive, I never get upset or scared. They just keep that energy going, and I think they are saints!
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Lisa, I agree with you re overmedicalization of sadness. Although there are times that treatment is needed, I think that the overtreatment sometimes prevents people from recovering from the situation that was the issue.
In other words, sorry girls, after a while we are gonna have to quit the happy pills........
I feel lucky about my treatment area too. I actually get my treatment in sort of a storage room (where there are NO needles). The nurses keep their bags and lunches or whatever in there, and there are some other supplies (but NO needles). And my husband sits in there with me. I have to walk through where all the other people are, but I have no idea how many there are or what kind because I look at the floor (where there are NO needles) and my husband leads me to the chair. But, best of all--tomorrow is the last one! YAY!
Once there was another guy in the closet with me too (lol), he had tonsil cancer. And they only removed the tonsil that had cancer, and left the other one in. Doesn't that seem just wrong?
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Lisasinglem: where you get chemo sounds lovely! The nurses are good where I am but there are so many people getting chemo, they are busy and there is not a lot of entertainment. They do bring dogs through and they are so cute. That cheers me up! To be honest I feel like such a creep admiitting these people in that room get me down but they do. I have cancer too but I am not all upset and melancholy about it. I just think it is not everything but is just something else. In any case, you mentioned Christmas and hopefully they will put up some decorations and play some holiday music and that will get me through December! The atmosphere is WHY I am listening to Tony Robbins which is loaded on my blackberry anyway. I am trying to keep myself in a positive mindset and block out what surrounds me! 5 more...that is it!
DebJ: I have no idea how they bruised you in Lebanon. Accessing a port is supposed to be one of the easiest things ever. My friend is a phlebotomist and when I asked her about the bruising she said it did not seem to make sense.
I hope your coffee is delicious
They have me on an extended tapering from the roids so I did not have a wicked crash but I did sleep a lot when I came down. That kind of felt good! 0 -
texas - you're officially my BC hero.
You have an amazing resolve that I think is going to carry you really really far on this journey, just by sheer determination!I had chemo #4 Monday and today is a total sh*t day. Seriously. I'm sick of this. The neulasta shot caused me a lot of pain last night in crazy places - through my ribs, both sides of my jaw, back of the neck, hips and legs and even my arms. I really wish I did not have to get this shot - I know it's for "good" but seriously! I'm achy today but not like "writhe on the floor" in pain - just sort of a "I have a cold" kind of leg aches.
My stomach is way off - queasy but not sick - hungry but not wanting anything. I hate this. I know it's my last AC but somehow that doesn' t make it easier. I think this stuff affects me psychologlically - I just feel overwhelmed with everything. My lawn is driving me nuts - waiting for a mower belt to come in the mail so we can get it fixed- but why is that bothering me SO much when I have such bigger issues going on? My six year old refused to let me sleep this morning - I gave him some schoolwork to do and he kept coming into the bedroom and bugging me for crazy things (he wanted something to eat even though he had just eaten, etc) every five minutes - waking me up. I was ready to smack him! but I also know that he's really bothered to see me like this - bald and looking like a wrung out bleached rag lying in a heap. It's hard for our kids and it's hard to be mindful of that too.
Re infusions: I didn't realize that most infusion rooms weren't private. Our cancer center is pretty small but each person has their own private room. I can't even think about it now - it makes me queasy.
Debating whether to take a compazine or not - I'm not sure if I'm feeling queasy or just really achy and lousy all over!
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Lisainglem: I am sooo jealous. I love SF, have only been there once and definitely want to go. It is the most unusual and beautiful city I've ever visited.
On the infusion room: Mine doesn't bother me. Probably because I took my mother to dialysis 3xweek for about a year and a half. I got used to seeing the other patients there (one who was blind and two who had lost limbs due to diabetes and kidney disease). And my father did chemo for colon cancer 15 years ago. I think the older you get and the more life experiences you have, the more you come to acceptance. Treatment is necessary for my cure. And it's a sad fact of life that there are going to be others there whose lives are not going to be saved and who are buying a few precious weeks or months of life with their treatments. But the point is, to me, that we are all still here and doing what we can. And that gives me a feeling of hope and peace.
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